I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Patricia Harrington is a long-term pulmonary hypertension
survivor. Patricia discusses how she has battled her rare,
life-threatening diagnosis by doing as much as she can to enjoy
life. Though she has had to compromise her love for country dancing
and exploring lighthouses, Patricia’s positive outlook and passion
for PH awareness motivates to do everything possible to educate
medical professionals and members of her community.

My name is Patricia Harrington and I’m from Glendale,
Arizona.

13 years ago I was diagnosed. Of course, a couple of years
before that we were trying to figure out what was going on. I've
really been blessed I've only been taking a single medication and
haven't had to go on to all these complexities of all these
different mixing the medicines. All this other stuff that a lot of
people have had to do. I've had it for 13 years. I live with it. I
try to do everything I can possibly do in whatever range I have of
being able to go that day. I want to do as much as I can, I don't
want to leave anything uncovered. I want to enjoy life.

The news and the things that you would read about PH at the time
were that you weren't going to live past 2 1/2 years. I wasn't
relieved at all. I was scared and worried. For several years I was
thinking I was going to die just any moment. That's probably where
I got the idea I wanted to fill up my life with everything I could
do so that if I died tomorrow it'd be all right. I still did
everything.

Another thing we used to do was go to lighthouses and climb
those steps, 200 and something steps sometimes. I loved it. I
couldn't always get too high without having to stop and rest. I
loved climbing to the top of the lighthouse. I can't do that
anymore either. We used to dance. My husband and I used to country
dance 4 or 5 nights a week if we could. I would get dizzy as years
went by, I would get too dizzy. I would not be able to do what I
used to do. We used to country dance a lot. In fact at the first PH
affair that we went to it was a fundraiser. They had country
dancing. That was before I was on oxygen. We danced that dance. My
doctor happened to be there. He was just laughing at me being able
to dance. It didn't last much longer after that. I just get too
dizzy.

The housework, I don't do that much anymore. Little things like
that start happening as you go along. I'm really passionate about
getting the word out and media. I want to learn how to get TV and
newspaper coverage for our support group and PH community back in
Phoenix. That's one thing I've been working hard on.

We don't want the patients that are suffering now to have to
wait 3 or 4 years for the right diagnosis before they can get on
the right medication. If they continue going to doctors who don't
know anything about PH. They're going to have a lot of trouble. We
would like to prevent that from happening. Hopefully the doctors
will start learning more and more about PH. When you see or read
the stories about the children, you certainly ... I don't want the
children in the future to have to suffer the way we have been
doing. That's another future hope is another good reason for making
people aware of it.

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About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global